The Hidden Benefits of Age Related Macular Degeneration (AMD) - It’s All In How You Look At It

When I was first diagnosed with AMD I was introduced to the Amsler Grid, photos of people with blurred out faces, predictions of hallucinations, absence of straight lines and other tricks my brain might play. All the predictions came true. Also true was that my attempts to share my growing visual chaos was not found to be an engaging topic by my retinologists. I have had fifteen plus years with excellent retinologists attending to the status of my retinal health and treatment. Although I kept trying to get their assessment of my changing vision it was typically met with passing acknowledgement that whatever it was is just what happens with AMD.

AMD support groups seemed to be the answer. It might have been, but my most extreme visual changes happened during COVID. The in-person groups were shut down. The on-line groups were available but were focused on how to regain some level of normalcy with adaptive equipment or for socializing. Neither of these addressed the spinning wheels, seeing things that weren’t there, not seeing things that were, looking through clouds of red and blue dots as well as the always present blurry and strobing areas.

I went through the five stages of grief (denial, anger, bargaining, depression and acceptance) each time another activity I had enjoyed during my first fifty years was no longer a joy, or even possible. I was still working when the Ocular migraines began impacting every aspect of productivity. Limitations on reading, work, hobbies, and general life management activities grew. This started my first round of working through the five stages of grief.

My optometrist referred me to an opthalmologist who told me during a series of appointments that I was too young to have macular degeneration and the cause of my progressing ocular migraines was stress. This was the case until the appearance of the abnormal blood vessels and an urgent rush to a retinologist for assessment and treatment. Diagnosis was one eye with wet AMD and the other with dry AMD. Treatment was monthly injections with medications of increasing strength to address my uncooperative retina. The dry eye was monitored for changes that eventually arrived giving me two eyes with wet AMD. At this stage my eyes had chosen not to work collaboratively. I began therapy to retrain my eyes to work together again. This was a very positive experience. During this time it was suggested that surgery to lift my brow and eye lids would increase my range of vision. I had the procedures and imagined all the driving trips my wife and I would take in the upcoming years. It was then my left retina erupted resulting in a huge change in my vision. This began my second round through the five stages of grief.

I was no longer working by this time and had come to terms with many of the limitations I was experiencing to date. Suddenly this huge new change to my vision disrupted any sense of self-sufficiency I had managed to hold on to until then. I sought support from local agencies serving the blind population. Home visits, classes, support groups and recommendations of countless adaptive applications and devices were offered. All with the intent of propping up some sense of competency in my visually distorted world. I found myself in full resistance mode to all that was offered.

I understood the value of the services for children and working people and maybe even for myself. They all can help adapt to a visual world generally agreed upon as normal. However they were not addressing my original and continuing need to investigate not only the physical, social and practical aspects of my circumstances. but to investigate and express the chaos within my residual field of vision.

The conclusion that ”it is just what happens with AMD” justifies all that medical research as well as adaptive devices and methods provides. But it also obfuscates the potential value of learning how to investigate the unique aspects of one’s visual chaos and how it may contribute positively to their world as well as that of the world of “normal vision.” Despite this, I fully recognize the medical miracle that preserved my vision for fifteen years, giving me opportunity explore the hidden benefits within my AMD journey now.

So I’ve begun to investigate my visual chaos and tried to represent what I found in a series of paintings. They do not presume to express what others can see or would see if they began their own investigation. They are intended to let individuals new to AMD as well as their family and friends see what they may be experiencing beyond blurred faces and distorted Amsler Grids. They show my hallucinations, absence of straight lines and the other tricks my brain plays. My trick is paying close attention to the fleeting images allowing me to replicate them accurately on a canvas. Turns out some of the paintings represent my best work.

This resolution is not without precedence. In his biography titled Beethoven: The Universal Composer, Edmund Morris discusses the early onset tinnitus and consequences of Beethoven’s ultimate deafness. Instead of a silent world in which to create his masterpieces, Beethoven’s head was filled with chaotic sounds which likely contributed to the dark depression he eventually overcame and resumed his work. During his research Morris interviewed a Neurologist who shared that he had been going deaf over the past four years. Familiar with Beethoven’s work, the Neurologist was able to identify sounds he experienced with his tinnitus with those Beethoven included in his later works. So, Beethoven’s auditory chaos contributed positively to his work and to the world of great music.

My experience/investigation of my visual chaos allowed me to recapture a level of self-determination, in an area I thought was out of bounds due to AMD.

In my case, the experience/investigation manifested itself in how I was able to translate a known image into a far more complex version of itself. Each photo model is of an object or place within my home or neighborhood. I have a clear memory of the images in each of the photo models because I saw them many times well before my vision changed.

I had to assess my painting skills and competencies in order to produce the images I now see when looking at the photo models. Through trial and error, some skills had to be adjusted. Others were new additions to my existing skill set.

Coincidentally, the images I now see in the photos are dynamic. They change constantly. I had to memorize a single version of what I was seeing in the photos and hold it long enough to sketch it on a canvas and paint it.

The overarching element throughout my experience was the inescapable reality that I could no longer visually focus on painting, sketching or reading for longer than 15 to 20 minutes at a time without a break of at least the same amount of time. When I would get overly inspired and neglected the necessary breaks in order to achieve some level of completion or self-gratification, I was rewarded with exhausted eyes that refused o cooperate again for the next day or two.

Experiencing/investigating visual chaos allowed me to recapture a level of self-determination in an area important to me, that was generally presumed to be out of bounds forever due to my AMD.